Category: Duchenne Stories

Mi nombre es Pablo David Paredes, tengo 11 años,padesco distrofia muscular de duchenne, vivo con mi mama Silvia, mi papa Christian y mi hermana Stefania. Soy de Cordoba Argentina,en la semana por la mañana voy a rehabilitacion: kinesiologia, hidroterapia, terapia ocupacional y sicologia y a la tarde al colegio,donde ademas de aprender, me divierto mucho con mis compañeros. Me encanta jugar con los videojuegos,escuchar musica y cantar, a veces estoy un poco enojado, porque me cansa levantarme por la mañana para hacer mis terapias, luego se me pasa, porque se que me hace bien. Los finde semana salimos todos juntos a pasear eso me hace muy feliz. Mi sueño es conocer Estados unidos y que salga prontito la cura de esta enfermedad.

Hej
Jag heter Zebastian, är snart 12 år gammal. Jag har dmd, adhd och dyslexi. Jag bor i Sverige med min mamma, bonuspappa och 7 syskon. Det bästa jag vet är att spela Playstation 3, men sparar ihop till en Playstation 4. Förra året fick jag en knapp på magen. Genom den får jag min mat och mediciner. Jag har nämligen väldigt svårt att svälja. I skolan går jag i en liten grupp. Ibland är jag själv där men vissa lektioner har jag med min stora klass. Jag älskar idrott och matte. Jag har ett stort gäng med personliga assistenter. De hjälper mej dygnet runt. De är mina bästa vänner. Med dem går jag gärna på bio eller till badhuset. Film är jättekul och en av mina drömmar är att se hur man spelar in actionfilmer i USA. På helgerna springer jag gärna och leker med mina syskon. Fotboll är rätt kul eller att leka i sandlådan. Nyligen fick jag en ny elrullstol som jag brukar köra när jag blir väldigt trött i benen. Min allra största dröm är att få åka med hela familjen till Florida, till Disneyland och sen få åka på deras kryssningsbåt. Men först ska jag spara ihop till en ny Playstation 4 så jag kan spela ännu roligare spel.

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My name is Zebastian and I am almost 12 years old. I have DMD (muscular dystrophy), ADHD (attention deficit hyperactivity disorder) and dyslexia. I live in Sweden with my mother, stepfather and 7 brothers and sisters. The best thing I like to do is to play with Playstation 3; but I am also saving towards a Playstation 4. Last year I got a button placed in my stomach. I get all of my food and medicine through it because I have a hard time to swallow. I go in a little group in school and sometimes I receive individual instruction. I also go in a larger class for some of my studies. I like math and physical education. I have a large group of personal care providers that help me 24 hours a day with my needs. They are my best friends. They go with me to movies and the swimming pool. I love movies and one of my dreams is to see how action films are made in the USA. On weekends I run around and play with my brothers and sisters. Soccer (football) is fun or we enjoy playing in the sandbox. Recently I got a new electrical wheelchair which I use when my legs get really tired. My biggest dream is to travel to Florida with my entire family and to go to Disneyland and to take the boat cruise there. But first I will save to buy a Playstation 4 so I can play games that are more fun.

Mi nombre es Luis Gerardo Madrigal Negrete. Me gusta que me digan Gera, para mí lo más importante es Dios y tener una relación personal con él, soy cristiano, mi familia y mis amigos también son muy importantes para mí, tengo dos hermanos y una hermana, que se llaman Alejandro, Elizabeth y José. No tengo mascota pero me encantaría tener una. Soy la segunda voz de Los Big Boys, grupo que formamos algunos beneficiarios de ADMO. No me gusta las mentiras ni la gente prepotente, me gusta la música cristiana principalmente aunque escucho de todo un poco. Mi comida favorita son los tacos. Unos de mis sueños es poder ayudar a la gente haciendo trabajo social o algo así, porque sé que hay muchas necesidades y cosas por hacer, y sé que puedo hacer algo para mejorar la situación de comunidad aportando con mi granito de arena siendo autosuficiente.

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My name is Luis Gerardo Madrigal Negrete, but please call me Gera. To me, the most important thing is God and to have a close relationship with HIM, I am Christian. My family and friends are also important to me. I have two brothers and a sister, Alejandro, Elizabeth and Jose. I don’t have a pet but I would like to have one. I am the second voice of Big Boys, a band formed by some beneficiaries from Asociación de Distrofia Muscular de Occidente A.C. (ADMO – Mexico). I don’t like lies or arrogant people, I like Christian music mostly but I listen a bit of all. My favorite food is Tacos. One of my dreams is help people doing some social work or something like that, because I know there are tons of needs and so much to do, and know I can do something to improve the situation of my community just contributing with my best efforts, to be independent.

Seth is a 9 year old boy with Duchenne Muscular Dystrophy. He is friendly, loves swimming and can build amazing projects with Legos. Like many boys, he also loves to play ball, any type of ball. Baseball is his favorite and as long as he can walk and play, he will do just that. While he is not as fast running bases and tires easily, he is gives it his best and loves every minute. He asked recently about not being able to walk and inquired what would he do if he could not throw a ball. Fortunately, thanks to the amazing work of PPMD and their vision, I witnessed a robotics demonstration and learned about many ways people are helping kids and adults with Duchenne do things they no longer have the ability to do. After explaining about these innovations, he was excited that his ball playing did not have to end. It would just need to be modified with robotic type devices. He would love a cure for DMD and prays for it nightly for himself and all the people affected by it. He also prayed for a dog for several years. Now he has his dog, Edison, who is his service animal and “brother.” He is pictured here with Edison. While he loses strength each day, he continues to fight DMD and never gives up. His parents are inspired daily by him and his smiles bring joy to their home.

Tell us about yourself.
My favorite color is green and I love to play baseball.

If you could change something in the world what would you change?
No School.

What is your best memory?
The trip to Give Kids the World.
(This was our Make a Wish Trip to Disneyworld. He said it was like paradise.)

What is your funniest memory?
We have tickle fights together as a family.

If you could invite any three people dead or alive to dinner who would that be?
Levi, Logan, and Talan.
(Funny- these are his best friends he has kept since daycare.)

My day is a success when… I have fun.

This is my son Matthew Denger and his close friend Beth. I chose this photo because it accurately captures my son the way he lived. Matthew was attending university, studying Political Science and always with friends. My son passed away in February 2013, yet his spirit lives in those who knew him well.
Duchenne muscular dystrophy is a cruel disorder robbing a person of physical ability and independence.  My son stopped walking at age 8, needed surgeries by age 13 to correct the deformities in his feet and back stemming from muscle weakness and slept with mechanical breathing support starting at age 16. Like many of his affected peers, Matthew didn’t allow Duchenne muscular dystrophy to end his goals and dreams. In spite of his physical condition, he attended college full time and was an Orientation Leader and part of the team that welcomed and helped new students at the university. Matthew volunteered in the local office of our US Senator, sang in a community chorus and enjoyed being with his friends.

My family misses Matthew dearly and always think of him with fondness. We sometimes wonder what he would have been like if he didn’t have muscular dystrophy and realize he probably wouldn’t have been different than he was. He lived a life of no regrets and always looked to the future.

On World Duchenne muscular dystrophy Awareness Day I share a bit of his story to encourage those who live with this disorder to set high goals and to pursue their dreams. I also write hoping others will learn about the condition and consider getting involved by helping to fund research to improve survival and the quality of life for those living with Duchenne muscular dystrophy.

Today and every day I remember Matthew. On this day I share his story to help others know him and help those like him.

Peace

Brian Denger

I’m Jared Sweet, and I’m 13 years old (14 on August 2nd). I have a mom, dad, 2 brothers, 2 dogs, and a lizard. My favorite thingsto do are read and play video games. If I could change one thing in the world it would be the amount of food allowed in a stomach. My best memory will probably be when I’m 20 or 30. My funniest memory is most of the stuff my family says. If I could invite any three people to dinner they would be Russell Wilson- the Seattle Seahawks quarterback, Pele- the Brazil soccer legend, and Steve Jobs-Co-founder of Apple. My day is a success when I get 8 hours of sleep.

My name is Kevin Friar and I am 15 years old and am the middle child of a older sister and younger brother and currently attend school at Forest Hills Central High. If I could change something in the world it would probably be the price of a car and conversion. If I could invite three people to dinner it would be Miguel Cabrera, Jackie Robinson and Yonis Cespedes. My day is a success when my back does not hurt.

My name is Luke Bowman. I live in Littleton Colorado with my mom and dad. I will be in 1st grade this fall at Ralph Moody Elementary School. I love playing with other kids and my cousins more than anything!  If I could change something in the world, I would have a sister. I am super talented because I am good at swimming, singing, dancing and playing video games. I also love to ski, ride horses, build Legos and go camping and fishing. My best memory is going to Camp Promise for the first time- especially doing the climbing wall and zip line. My funniest memory is pinching Minnie Mouse’s nose when I met her.
My day is a success when I had fun playing with my friends. If I could invite any three people dead or alive to dinner, I would invite Luke Skywalker, Yoda and Mario.

Loris ist sehr unternehmenslustig, er liebt es auf Spielplätzen zu klettern, ins Schwimmbad zu gehen und dabei ins Wasser zu springen. Wenn er der Mama beim Kochen helfen kann ist er glücklich.

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Loris is very adventurous, he likes to climb on playgrounds, to go to the swimming pool and to jump into the water. He is very happy when he can help his mom cooking.

Me llamo Diego Axel A rellano Salomón. Tengo 12 años y estudio en la secundaria y tengo distrofia muscular de Duchenne. Me gusta la música de bigbang, G dragón, y Pitillo. Práctico el deporte Boccia en el teleton, entreno 1 vez cada 2 semanas.